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Dx with Hashimotos Encephalopathy
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Dx with Hashimotos Encephalopathy

Is there anybody on the forum that has been dx with HE, I know it very rare but never realized how rare most people dont even know what it is. Would love to talk to somebody that could relate to some of the issues, and I have so many Questions . Thanks Barbara
10 Comments Post a Comment
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649848_tn?1357751184
You're right, HE is very rare; I don't know of anyone on the forum who has it.  

If there is anything we can help you with, though, please feel free to ask; maybe we can help in some small way.

You might want to check out the Mayo Clinic website on HE -- I looked at it not too long ago in relation to another issue; seems they have some good info.
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1511858_tn?1290481059
Hi Barb, Thats my name too :) I have seek people out that has posted that they have it but they never write back, I have read alot of things on the forum I can relate to regarding HT,
   Right now I am good received last IV steriods a month ago, and was hoping to talk to some people and educate myself but doesnt look like thats gonna happen. Besides the lady that wrote so much about it (sorry cant remember her name) .
   I will look at the mayo clinic website, I guess what I was looking for was a site like this it would be so nice to talk to somebody and see how they are coping and doing.
  Thanks so much for your response
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Avatar_m_tn
Pardon me for poking my nose into this, but I just wondered how they diagnose HE and how reliable is such a diagnosis.   The reason I ask is that I found during my thyroid wandering on the net, a study that showed via brain scans the reduced cerebral blood flow associated with hypothyroidism.  It just popped into my mind that I wonder how badly CBF can be affected by various levels of hypothyroidism, and could this ever be misconstrued as HE.  

I know how often hypo patients are misdiagnosed and under medicated, and since you have Hashi's, I wondered how effectively it is being managed.  Do you still have hypo symptoms?  What medication are you taking and how much?  Have you been tested for the biologically active thyroid hormones, Free T3 and Free T4?   If so, what were the results and reference ranges?

Is there any possibility that continuing hypothyroidism and reduced CBF could be contributing to your problems.  If not, I'll leave you alone and go back to sleep.  LOL
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1511858_tn?1290481059
Im a little embarrassed to say alot of those questions are difficult for me to answer,, I was dx by thyriod antbodies, and high pressure and protein in lumbar puncture and hospitalize the first attack with what they thought a stroke then severe movment disorder unable to then they thought mad cow disease I was in hospital 30 days a week of it in icu i had a team of drs but before they started IV steriods my entire family was called in they were told they thought I was gonna die they couldnt find what was going on then they found I had hypothyriod and high antibodies which was disregarded but started treatment with thyriod meds, then started steriods and b12 because they thoght chorea because they also found strep in my blood stream, after 3 days of steriods I could talk clearer and control some of the jerking by the 5th on steriods I could walk with walker still had tremors so much more but to much to put down but after that have had stroke like attacks severe tremors where i couldnt stand on rt leg without it jumping up and down just so many things  everytime i had attack steriods would fix and they always found tpo in the thousands and tsh high it wasnt a easy dx it took a team of a endo 2 neuros and a rheumy but after steriods tpo and antibodies down to the hundreds and im walking and talking. I do have so damage that I am learning to live with though, it was a humbling experience and i will take movement , thinking, speech, or words for granite again because i know they can be gone with a blink of the eye
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1511858_tn?1290481059
I apolgize for spelling and words missing and lack of sense I made I just reread it I do have a issue with this, I would like to say I am or was a very intellgent person and even though this part of me has been removed as far as writing and words and communication it wasnt removed enough because I recongize my mistakes :) I try to keep things simple now lol. spelling and communication thru writing never really came back to me, i cant read a book or learn like I use too. but i am soooo happy to say that I am going to see dr markwell? on friday and he has treated one other person with this and was successful and I cant wait to feel mentally like myself again!
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Avatar_m_tn
If you are seeing the doctor tomorrow, I urge you to insist that they test you for the biologically active thyroid hormones, Free T3 and Free T4.  Don't take no for an answer.  
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Avatar_f_tn
Hi babb, I remember coming across this topic and a few posters wrote about their stories but it was on another forum. It was very scary to read, b/c at the time(and still do) I have moments of forgetfullness, and do things that a normal 38 yr woman wouldn't do, such as leave the keys in the car running, lol. I've read that the medical field usually think it's alzheimers at first until they do an MRI. I guess the good news is once the cause is found, the damage can be stopped. I know you're here seeking answers but I have one for you. Do you know if HE is only possible whn the TPO antibodies are into the thousands? I'm just curious if ther'es an inflamation (inflammation) number(ie 100,200,300) that puts you in the ''safe'' category...the category where it wouldn't even be considered??

Oh and don't worry about your typo's, I'm always editing, lol.
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Avatar_f_tn
I was recently diagnosed with HE.  I want to read all of your posts before I comment.  I believe the diagnosis for the most part, but I also know that a lot of autoimmune disorders are being clumped together because that's convenient.  The doc wants me to go on prednisone and I absolutely won't do it.  Looking for other options.  Contact me anytime with questions or comments about it - I'll help with my experiences as best I can.
Natalie
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Avatar_f_tn
hi, my son was diagnosed last may, he is on pred, immunoglobulin and mycophenolate mofetil (cellcept). due to the prednisolone he has cateracts that are progressing so fast he has changed glasses every 3 mths. he gained approx 6stone in weight and now has myopathy but he wouldnt be here without it. yes terrible side effects but what is the alternative! they are still trying to wean him but he relapses. the cateracts wont heal, the weight will go though and the myopathy will too. sorry for bad grammer, but i had to ppst quickly.the importance of the pred, not nice but def necessity. aside from that they wont even try other meds without pred first because they are so expensive, alot of abstracts/reports ive read have sucessfully had and weaned with no relapse or a good amount of time between. thyroid autoantibody range at our hosp is 60 or below, some reports say 25ish. i think its safe to say if its in the hundreds then HE is a possibility. they rule out all the nastier stuff to be left with HE and the auto antibody. hope my ramblings help??!!!
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Avatar_f_tn
p.s. thyroiditis does not give u HE. my sons thyroid is fine, they expect it to go underactive but dont know when, just that it will. also hashimotos thyroiditis is very common, hashimotos encephalopathy is a completely different thing they just commonly get confused because of the hashimoto :-)
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